Being Mortal: Medicine and What Matters in the End
My friend told me about the book Being Mortal when it first came out. I did my usual thing which was I put it on my list. Then I saw a few articles on the book and finally decided to dive in and read it. The book is incredible. The writer is a doctor who not only shares his own personal stories around mortality but gives us clear data on how best to serve aging, death, medicine and to end our lives in dignity.
Being Mortal is a topic that nobody writes about or it seems wants to talk about. One of the most difficult decisions that families must make when a loved one gets sick is how to think with your head vs your heart. Generally it is not one person making a decision but several which makes it even more difficult.
As I read through each chapter I could not help but think about my Mom. We found out that she had a glioblastoma on November 5, 2010 and she died on December 15, 2010. We made a decision to have surgery because the doctors were not sure what type of brain cancer she had. The reality is I am not sure they wanted to tell us. I took her to the hospital right after the MRI showed a large mass in her brain. An entire week of tests in the hospital to rule out many things before operating. After surgery the doctor (and others that we saw) gave us this hope that if we had chemo that somehow we would prolong her life. There was no doubt in my mind that the life that they could possibly give her for maybe a few extra months (and that is a huge maybe) is not the type of life she would have wanted to live. She said that she wanted to be able to go to the movies, do the crossword, read her books and travel. If she could not do that our decisions should be made around those desires. We realized very quickly that treatment was not going to do anything and more than anything not let her leave this earth with self-respect.
There have been many studies done around hospice care. Not surprising but most have been conducted by insurance companies to prove that spending millions on medicine to keep someone going at the end of their life is not productive or a good financial decision. There is always a miracle in there but rarely. One thing that has come out strong and clear is that you live longer only when you stop trying to live longer.
When we told my Mom what she had and about the decisions we were going to have to make she said very little. She wanted to know if she was going to be able to take the trip she had planned in the next few weeks to Peru. Some might call me too pragmatic but when we were alone right after that I asked the questions that nobody wants to ask. I knew she wanted to be cremated so I asked where did she want her ashes to be spread and how did she want us to celebrate her life when she dies. I told her that she would not be taking that trip. She knew that there would be no returning to the life she had led but not one doctor told her that. They should have. It would have made it much easier for my sister and possibly my brother who supported the decisions that I made. It was important to me that we all were in unity on the decisions I thought should be made but it is not easy.
The other thing that nobody talks about is the decisions. The entire life of an illness is about decisions. They are constant. It is an endless stream of decisions based on the outcome of the last decision. It is emotionally draining.
At the end of the day, if I had to make any of these decisions again I would have chose to do nothing. We would have come home from the hospital after the endless tests that concluded she did not have an infection. She had a terrible quick moving cancer that there was very little information about. As one doctor said to me ( who was my gyno not the doctor that treated her ) is that having a glioblastoma is like being struck by lighting. In my heart I always knew that the decisions we made (I was the one in her will that was responsible for her medical decisions because she knew that I’d be pragmatic, tough and bold when it came to making decisions) were the right ones. This book has validated everything we did. We would have done less if the doctors were not so concerned with saving her but being thoughtful about maintaining her quality of life with dignity until the end. It might have given us more time just enjoying her company.
Comments (Archived):
Sorry for your loss, Joanne.A friend of mine is a liver surgeon. Her advice; die like a doctor. I hope to heed it when the time comes.
Indeed, doctors don’t die like the rest of us. Very telling.
It’s so nice you were able to have a conversation like that with your mom. Some people can’t do that with their parents.Saw my grandfather die. He didn’t have the death experience that your mother had. He was 98, and was in a home with a careworker assigned to him. The careworker was trained in how to help people walk the path toward their demise. It’s often very hard for the person to die.A very close friend of mine died of pancreatic cancer last year. He was 52. He struggled and fought for 22 months but the cancer won. I was talking to a priest before he died and he told me, “Tell your friend how much he meant to you. Tell him that he added to your life. That is a way of giving him permission to die.”Another very close friend of mine wrote a book about his wife who passed away from a quick moving brain tumor as well. It’s called “The Color of Rain”. It’s a pretty beautiful story and it moved me to tears.What I don’t want is the government, or a government bureaucrat deciding when it’s time for me to go. I want it to be my choice, or the choice of my loved ones. Just like you and your mother.
will look up the book. we should be able to make our own decisions on this. agree
@pointsnfigures, I really like the advice “Tell your friend how much he meant to you. Tell him that he added to your life.” But I don’t think we should wait til someone is dying to say those words! How great would it be to really practice that sentiment—with everyone. Not just give them permission to die, but give them reasons to live. Not just say “oh you are great” but tell a person how they brought meaning to Give a gift of people that helps them understand their context in the world, and an acknowledgment that their life had meaning. Practicing it in everyday life would make it that much easier to do so during the difficult times of grave illnesses and death. And it would give people a reason to *want* to be with someone who is dying, rather than dreading it—those moments together become a way of assuring the dying person that their life had meaning. What a beautiful way to ensure they get to leave this world with grace and dignity.
I wonder how we can change the metrics for ‘success’ for doctors. It seems very binary right now. A win is ‘living, a loss is ‘death’. It’s very hard to decide between a good death and bad life, it really goes against our survival instinct. I’m glad you were able to overcome that for her sake.My mom fell off some stairs a few years back and hit her head. After an MRI, a large mass was also discovered. Turns out it’s a benign brain tumor, but… it has served as a wonderful ‘heads up’ about our own mortality. It’s certainly changed the relationship I have with my mom. Not taking things for granite, like… time.
Joanne, so sorry to hear about your mom—but thanks for sharing that, it’s such an important story to hear. You are right, we don’t talk about these things nearly enough. Hearing about other people’s experience in such a difficult time makes it that much easier when we have to face those difficult decisions ourselves, which we invariably will. In fact, that is what you do so well–tackle difficult issues with stories and insights that become a catalyst for larger discussions. Thank you.
You so did the right thing. This happened with my father in law. They were not my decisions to make, but they were not the ones I would have made. And his last days could have been much better had he not gone through chemo. If anything I think it shortened his life. But that is just my opinion. Your mom was smart to choose you, you are pragmatic and level headed in the face of adversity. It’s a hard topic, but it does need to be addressed on so many levels. Important blog.
I loved this book too. So helpful as I deal with aging parents and dementia. Your point about illness and constant decisions is so right on. With long drawn out illness and decline, sometimes you make decisions with your loved ones and you don’t even fully realize a) this is actually a key decision or that there are other options or b) the implications of those decisions. This book is powerful in helping to highlight those facts.You have a lovely story, one I will remember.
thanks deidre.
I’m a big fan of Atul Gawande’s works – loved the books Better and Complications as well as his many columns in the New Yorker. He is so thoughtful about the big picture of medicine – takes a systems/process view that doesn’t lose the human side. http://www.newyorker.com/co…
+1 for your courage Joanne (both in sharing the story and for having this difficult conversation with your mom in the first place)The best friend of my co-founder got struck by lighting 2 weeks ago while on a back country canoe trip (actually, lighting struck a tree, tree fell on her).Broke her neck, now she can’t feel her legs anymore.My co-founder was with her on that trip, so we’ve been reflecting and talking about life from a broader perspective lately.Sounds cheesy, but I think our biggest takeaway from all of this is to truly and sincerely be grateful everyday, even for the most trivial things that we take for granted.In fact, *especially* for the things we take for granted. Like walking for example.
this is the accompanying film from Frontline – http://www.pbs.org/wgbh/pag…
thanks. watching now
Went and bought this based on your post here (and the reviews on Amazon).Just added it to Product Hunt Books as well: http://www.producthunt.com/…
thanks!
.Tough subject. Tough path you followed. Tough love. Just tough all over.Getting old is not for wusses.Atul G also wrote The Checklist Manifesto, one of the best books for business ever written.JLMwww.themusingsofthebigredca…
I am going to read that one too
Great book, brilliant doctor. Palliative care is key.I am sorry for your loss. That must have been a very difficult 40 days. You are lucky that your siblings didn’t fight your decisions.Adult children are afraid to bring up death with their parents yet, we are all going to die. It is so helpful to know your parents preferences.This recently done rap video says a lot, Ain’t No Way To Die: https://www.youtube.com/wat…
OMG. My dear friend is telling her mom TODAY that they should remove feeding tubes…I just sent her this book on 1-day shipping and your post. I hope it can help her in time.
so hard. the book definitely puts things into perspective